Everyone in the room – the doctors, nurses, Rave, and even me – all thought the same thing, but no one wanted to say it.

For me, it became tangible when I realized I was having visual hallucinations and disturbances and couldn’t hear out of one ear. My blood pressure numbers were getting lower and lower and no one knew why. My chest hurt like crazy and I was struggling to breathe both out of pain as well as panic. The doc even asked me what my advanced directives were – like did I want a breathing tube – which they had never done before. That’s when I knew I might actually die, like, right now.

I’ve written a lot about how I hate asking people for rides, that it feels like panhandling. Even when people assure me that I can always ask and they like doing it, I still feel terrible about the whole process. After I left the hospital in October, my team had set me up with a slew of follow-up appointments; the idea was I was not well enough to go back home and return to normal life, but I wasn’t urgently sick enough to warrant staying in the hospital anymore. In particular, Johns Hopkins runs a “Heart Failure Bridge Clinic”, the “Bridge” being between hospitalization and home. You’re able to access services that regular doctors or cardiologist offices don’t offer, like IV diuretics.

I was able to attend my first Bridge appointment, and it was pretty standard. Other than a small med adjustment, it didn’t seem like a big deal. So when I wasn’t able to find a ride to the second appointment, I didn’t really stress over it. But then I missed a PCP appointment as well. It was a combination of people legitimately unable to make it and me not being in an emotional state conducive to putting as much effort in as I should have. Both Rave and I have been swamped with a preponderance of to-do items that are all “very important” and time sensitive as well.

I don’t remember when we first noticed that my blood pressures were off. I know I had started feeling dizzy and intoxicated without any cause. But however we got there, I started getting these ridiculously and somewhat unbelievably low readings with an average around 90/60. My home nurse told me to keep a close eye on it; well, that’s not exactly true, as she first recommended I go to the ER. When I told her I was feeling fairly okay and really didn’t want to go back to the hospital (can you blame me after a series of two-to-three week stays in the last four months?), she told me to keep an eye on it until I saw her later that week.

I decided to ask Dr. Google if there was some easy things I could do to bring my blood pressure up. This is when I was introduced into my current medical dilemma: as a congestive heart failure patient, I should severely restrict my fluid intake; but the one reliable way to raise and maintain a good blood pressure is to drink a healthy amount of fluids. So over the next few days I drank more fluids that I was “supposed” to and as it were, the more I drank the better I felt and the better my numbers were.

Well, not all my numbers. People with CHF have to weigh themselves every day because even small gains may be a sign of fluid retention and could require a change in your diuretic dosing. Every day I “cheated” on my restriction, the next morning would see the resultant weight gain; usually only a pound or two, but by the end of the week I was up over 10lbs. My nurse was pretty unhappy but we all agreed that since I had a Bridge Clinic appointment that Wednesday, I would just wait and see what they had to say.

Except that no one I asked could take me to Baltimore that day. By Tuesday midnight, I sent the message to cancel my appointment. I don’t know what my plan was, but until they invent transporters I didn’t have a choice. I couldn’t even decide to drive myself, because Rave’s truck is still too broken to pass inspection and she needs my car to get to work. I didn’t sleep well that night. If I called an ambulance, they would have taken me to Hillbilly Hospital, and that was NOT going to happen. I felt defeated and depressed.

Even though Rave has been in hot water at work over how much time she takes off (mostly to take care of me), on the off chance the PTO gods would smile upon her, she submitted a request before she left work on Tuesday to see if they would let her take me to the appointment. We were pretty convinced the answer would be no, but I didn’t have a lot of other options. We were both surprised that when she got to work Wednesday morning, she saw that her request had been approved. She hopped right back into her car and came back to Hagerstown to pick me up.

We made a mad dash to Baltimore as we were cutting it pretty close, and the Clinic is one of those draconian offices that refuses to see you if you’re more than 10-15 minutes late. We even called ahead to see if that would help, but no dice. On top of that, I had only been to the location once before, and it’s hiding in one of the regular towers (instead of in the Outpatient Center) and I didn’t know which parking garage we should use. To make matters worse, there was practically no available parking in the one we chose, so we spent another ten minutes driving around in circles. We breezed into the office exactly 15 minutes late.

The nurse practitioner took my vitals and saw both the weight gain and low pressure – 80/40. She left the office to call her supervisor. Rave and I figured it was to figure out how much IV meds to give me…until more than 20 minutes go by and she still hasn’t returned. Finally, I gave voice to what we were both starting to fear – that they were going to admit me on the spot. Which is sort of what happened. There weren’t any free beds in the unit I would stay in, and after taking my blood pressure a number of times and getting consistently low numbers she felt the best course of action was to send me to the ER so I could be monitored while waiting for a bed. I am very glad to this day that this is what happened, as if I had not been in the ER when things went south I don’t know what would have happened.

Now, it’s good to know that even though my blood pressure numbers were ridiculously low (normal/average blood pressure should be somewhere around 120/80), I was upright, alert, oriented. I felt a little dizzy, a little fuzzy, and I was struggling more than usual with my aphasia, but overall I felt okay. I was more upset at the prospect of yet another long stay at the hospital forcing me to miss something I was really looking forward to (Thanksgiving with some of my most beloved tribe of the heart) and more medical complications and/or restrictions. But then things starting getting worse.

The first thing that clued me in as to how serious things were getting was when they moved me into the ERs version of an ICU bed. I was wired and constantly monitored. They took my blood pressure in just about every way conceivable – while I was in different positions, on different parts of my arms, and with different sphygmomanometers. My numbers were getting even lower – 80/30. 75/45. 60/40.

All of a sudden one of my ears went silent. It both felt and sounded like someone had slapped a thick earmuff on one side of my head. And of course, doctors and nurses and other hospital personnel are asking me a thousand and one questions and now I couldn’t hear them clearly. I was also getting more confused and finding it harder to understand everything that was happening. At one point, someone offered papers for Rave to sign because I was acting so erratically. (Yes, it’s legal, as she is my designated medical proxy.) I do remember someone asking me to state what was in my advanced directives, mostly about whether or not I had a DNR.

That was the first time I really and truly thought to myself, “This could kill me. They’re doing this because it’s possible this could actually happen.”

That was also when I noticed the visual distortion. I saw fireworks everywhere. Lots of red and off-white lights danced everywhere I looked. After images were causing trails if I moved too quickly (or if the thing I looked at moved quickly too).The light was getting brighter, to the point where I couldn’t really see anything else around me. My sense of chronological/linear time goes fuzzy at this point, so I have no idea in what sequence things actually progressed.

I do remember starting telling people, “I’m really scared. I am really, really scared.” Somehow, my reasoning said that if I refused to lay down I wouldn’t pass out or die. I started breathing more deliberately, again thinking that if I just kept willing each breath I wouldn’t stop breathing. The lowest recorded blood pressure was 40/30, although doctors are skeptical that it actually got that low since, in fact, I didn’t pass out.

That was just about a week ago. I eventually made my way into the critical care unit (which they call “stepdown”, as it is a transition between ICU and a medical floor) where we found out what the hell was going on. It seems there were three forces at play, and all of them were playing to win – which in this case means “messing with Del”.

CHF/Edema – In order to avoid retaining fluid which makes my poor heart and lungs work harder, I have to stay under a certain amount of fluid intake a day. I also take “water pills”, aka pills that make your body absorb less fluid and just pee it out instead. However, if I flush out too much fluid it puts a strain on my kidneys, which are already starting to show signs of damage from all this stress. It also leads to…

Dehydration – I am only supposed to ingest between 1.5 and 2 liters of fluid a day, and that’s not just what I drink. It includes any substance that becomes a liquid by the time it gets to your stomach, like jello, ice cream, pudding, salad dressing, sauce, etc. But as we all know, bodies need a certain amount of fluid to regulate themselves. I’ve always had low blood pressure, and 9 times out of 10 that’s considered a good thing. But when I was feeling dizzy and ill and I was pretty sure it was due to how low it had gotten, Dr. Google said the best bet to raise it was to drink more fluid, so I did. And even though I had increased my intake to almost 4 liters a day, I was still dehydrated because…

Infection – My pannus (the hanging part of my belly, the part that the 2012 surgery was about) is super swollen, which I assumed was part of the water retention caused by the CHF. Turns out that was only half of the story. My pannus is, once again, riddled with infected tissue. There isn’t a collection, like an abscess, that can be drained or removed. It is diffuse through the tissues. So my body was using every bit of fluid to make white blood cells and other infection-fighting stuff, which leads us back to dehydration. The lack of available fluids meant that the infection could proliferate faster and more efficiently. It didn’t help that I had to skip taking some of my meds for a month due to some health insurance stuff, and some of them were my maintenence antibiotics. (Bad Del.)

Yesterday I was transferred out of the critical care unit back to a medical floor I have been to before, which is nice because I know and like most of the nurses here. It also means less wires and other restrictions. The infection is pretty bad and causing a great deal of pain – the doctors keep telling me it’s the kind of healing that gets worse before it gets better. I’m on the good drugs for now – vancomycin (antibiotic version of a nuclear bomb) and dilaudid (painkiller version of a nuclear bomb). I’m in a lot of pain, but in a weird way it’s a familiar kind of pain, which makes it a little easier to deal with.

Most people with CHF really struggle with knowing how much fluid they can safely have without causing problems. Unfortunately, for me it looks like the line between too little and too much is very fine, and I’ve been warned that not only will it take some time and experimentation to figure out exactly where that line is and that there will be a lot of fuckups along the way. Fuckups mean more hospital stays.

My primary care doctor has even mentioned that I could go live in a skilled nursing facility – basically, a special floor in a nursing home that’s reserved for people of all ages who are too medically complicated to live at home but not sick enough to stay in the hospital. The idea is abhorrent to me, but if my lack of transportation is putting my life at risk I can’t fully dismiss the idea. Rave and I have started preliminary browsing to see if moving to Baltimore is even possible. However much we hate living in Hagerstown, the place we have is a godsend of accessibility; Baltimore is full of three-story row houses which will very likely not work for us. But I can’t even think about moving with a full heart until I deal with the divorce settlement, because Mike is claiming I have a part-time job with which I can support myself and therefore he should not have to pay spousal support or cover my prescriptions like he’s been doing since we split. I can’t afford a lawyer and few lawyers do family law pro-bono unless there are custody issues. It’s a big morass I cannot deal with without getting chest pain – and I’m not saying that to be melodramatic, I’m saying it because it really does cause me that much stress.

That’s the story of my close call. The reality and tangibility of the end of my journey is coalescing, and it’s a lot more terrifying than I was prepared for. One of my doctors admitted to me that if he were in my shoes, he’d be freaking out a lot more than I am. He even offered to send me a social worker to talk to, which is probably not a bad idea.

If you wanted to send flowers or the like, you can email Rave at delandrave at gmail dot com and she’ll give you the information. It would be greatly appreciated. I’m feeling kind of lonely and sad these days.

I try, when I can, to make the hour drive to Johns Hopkins Hospital when I think I’m having a medical emergency. However, on October 12th, I thought I might be having a heart event of some sort, and realized that I needed to get to the closest ER possible. This meant driving 10 minutes to the Meritus Hospital ER, which turned out to be the worst choice I have made, medically, since having surgery with Dr. WLS.

Over the week prior, I had reoccurring headaches, and increasing pain/weakness in my right arm. On my birthday, October 11th, the pain had become severe, and had spread to the right side of my torso, including over my sternum area. I really didn’t want to go to the hospital on my birthday, and I kept telling myself that it was the “wrong arm” (as, stereotypically, heart events cause pain in the left arm). However, by 3am I was having a hard time taking deep breaths, and the pain in my chest was pretty significant. I woke Rave up and told her I thought I should get checked out, even if it’s just to rule out a heart event.

I had other reasons to worry: I’ve had a bunch of irregular tests lately when it comes to my blood, my blood pressure, and my doctor was suggesting a statin because my HDL was a little (but only a little) high. My blood sugars have been high regularly, and it had been hard to regulate it because I kept having to go off my Metformin due to CT scans and other tests. (Metformin raises your body’s sensitivity to insulin, which helps a diabetic use less insulin – or none at all – to regular their blood sugar numbers.) And the pain I was feeling was pretty damn severe, especially in my right arm. In fact, the reason it’s taken me this long to write about this is because my right arm is still in severe pain – 7 out of 10 pain on a good day – and my hand and fingers have had some weakness as well, which has made it hard to type at all.

So Rave woke up and we drove down to the Meritus Hospital. I’d been there once before, for what turned out to be a superficial blood clot. I wasn’t very impressed then, but it wasn’t awful.

When we arrived, I was pleased to see that there weren’t many other people in the waiting room. One of my biggest reasons for being hesitant about going to the ER is the fact that often, we have to wait hours upon hours before anything significant happens, and I feel bad that the person who brings me there has to stay up all night (or longer) just so I can find out it’s no big deal. Also, ER waiting rooms tend to fill quickly starting on Friday night and lasting through the weekend, since people can’t call their regular doctors for less emergent stuff – or they wait until the end of the work week to seek treatment, so they don’t have to miss work.

The ER has big signs as you enter that say something like “If you are experiencing CHEST PAIN or SHORTNESS OF BREATH, please inform the registration desk immediately”. Since they were both happening to me, I rolled up to the desk and pointed to the sign and said, “That’s me.” I waited about five minutes before a triage nurse came out and led me directly to a EEG machine to determine if I was having a heart attack right then. Things looked a little abnormal, but not “OMG” abnormal, so they walked me through the rest of triage and then brought me back.

That was the end of anything that made sense for the rest of my visit.

A doctor came and saw me about 30 minutes after I was brought back, which seemed like a little too long for someone who might be having some sort of heart event. After listening to my lungs and asking me some questions, he decides I need a breathing treatment. I look at him and ask how that would help my heart problem, and he said, “Well, this will help us rule out something like an asthma attack”. “How about the fact that I don’t asthma?” Anyway, we had to wait for a respiratory nurse to come and administer the treatment, maybe another half hour. As soon as I was hooked up to the mask, other nurses came and tried to take me to CT and X Ray, and were told to come back when I was done. The breathing treatment did nothing for me but make me feel high and unfocused, which was not conducive to me answering the hundreds of questions nurses and doctors and techs had for me over the next two hours.

When I told the CT tech that I have had over 20 CTs in the last year, she freaked out a bit. “We usually recommend no more than 6”, she says. So I ask her, “Do you think this CT is absolutely necessary?” …and of course she says, “Yes.” I’ve asked that question every time I am asked to have a CT, and never ever has a doctor said, ‘Oh, well, now that I think of it, maybe we can do something else.”

When I got back, the IV ordeal began. The first tech poked me three times before she gave up, even though I showed her where most phlebotimists have had good success getting a vein. Then the doctor came back with an ultrasound machine, so he could visualize the vein before poking. Even with that, it took him three different tries to get a good line. This did not instill any confidence in me whatsoever. After that, I was given a small amount of pain meds – that did jack shit – and sat waiting for almost two hours. Also, after I witnessed my doctor put the needle in, then reach to a shelf with the same glove (thus contaminating the shelf) in a very habitual manner (which means this has happened before, with other patients), I asked him to change his gloves before he proceeded. In every other medical situation I’ve ever experienced, a request to wash hands or change gloves has been met with immediate compliance and no questioning. This doctor, on the other hand, looked confused and angry, and tried to explain to my why it wasn’t necessary. When I tried to point out how he was wrong, he copped an attitude and stripped the gloves off in a way that clearly communicated “I totally don’t want to do this, and I’m angry you asked”.

After this, a brand new doctor comes to see me – maybe because of the glove issue, since I saw the first doctor still there. This part is going to make me seem less PC, but I hate doctors who can’t speak English well enough to be understood. This new doctor was some flavor of Asian, and I couldn’t understand her at all. I had to have her repeat herself three or four times, and then I would try to restate what she said to make sure I got it right. I was told I had a PE, or pulmatory embolism, which is a pretty fucking big deal, life and death stuff. She told me I would be admitted for observation and for further testing. I didn’t feel I had a choice, since I had a PE, so I agreed.

One of the big things about Meritus that makes it a bad hospital is that the ER is the nicest part of the hospital. Once you get admitted, you’re shown through hallways and rooms that are old, dirty, not well kept, and feel depressing. Not that I’m usually overjoyed about being in the hospital, but many decorate the rooms so it seems a little less like you’re in a prison. This fact was made sadder when I found out that the hospital had been completely renovated only a few years ago. I was put on the “observation floor”, and considering how little actual “observation” I recieved, this misnomer should probably be changed.

I was brought a meal I couldn’t eat much of, and then the nurse chastised me for not eating more. When I explained to her I had food sensitivities that made most of this inedible, she told me that she would talk to someone in dietary to come up and discuss better food choices. Not only was it inedible because of my diet, but it was also completely unappetizing. I am pretty sure their miniscule portion of scrambled eggs were from a powder, having eaten my fair share of powdered eggs in my time. The only thing I was given to drink was coffee, which I can’t have because I am sensitive to caffiene.

During the intake, I was never asked about what meds I take. However, I was grilled at length about every single personal item I had brought with me. From my glasses to my underwear and my wallet to my Nook. I stopped at one point and asked the nurse “Is there a lot of theft in this hospital that makes this necessary?” She looked sheepish and said, “Oh, no, no.” But it did come across as though they were much, much more worried about someone stealing my phone than knowing what meds I take or what medical conditions I have. (Which no one ever asked me except at triage, and that was from a set list, which didn’t include many conditions I have.)

Then I spent hours just sitting around. No tests, no doctor visits, no pain or nausea meds, nothing. Finally, Rave started chasing doctors and nurses down to find out what was going on or to ask if I could have more meds. This is when we both directly observed hospital personnel, on several occasions, sitting around talking amongst themselves about non-medical subjects (at least twice we saw really obvious sexual/romantic flirting going on).

Also, there are signs on the walls everywhere that informs you that personnel have smartphones, but “rest assured they are not being used for personal use, but to enable communication in the hospital”. Although I applaud hospitals experimenting with new tech to facilitate better care, these were the most annoying thing in the world. The problem was not the phones themselves, but that caregivers (at every level, from techs to doctors) would always answer them. No matter if they were in the middle of administering a test (like the CT), or explaining your health status, or while you were trying to explain what you were feeling so they could treat you. It’s like all of the bad habits of smart phone usage in the general public in a condensed form. It was so frustrating.

When I asked about my home med schedule, I was informed that I should take them from my own supply (which I always bring with me to the hospital, but not everyone does). Later on, a nurse or doctor (I was never clear on who was who, since no one introduced themselves to me, ever) flipped out about this, and demanded me to both list every med I took, and that I have Rave bring my med bag home at the first chance. Since they never gave me any of my maintenance meds while I was there, I’m glad we didn’t. It took forever to get any meds from the nurses, and every instance was treated as though I was being totally unreasonable for wanting nausea or pain meds. There are big posters that proclaim that they have a committment to treating pain, but my experience was the exact opposite. And this wasn’t the typical, “Wow Del, you’re on a really high home regimen of pain meds, so we don’t want to give you any more”, because I am on (comparatively) much, much less pain meds than I was a year ago.

Finally, after waiting over 6 hours for the cardiologist to come (even though the other doctor said everything about my heart looked just fine, which was suspect in itself since I have heart problems they never asked about, like an enlarged heart), having been assuaged that I was next in line at 9am and it was now 3pm, the hospitalist came in and I asked her if there was any reason for me to stay in the hospital if everything looked good. At some point, the fact that I was told I definitely had a PE kinda went away, as no one else had heard this when we asked. Also, the fact that I had been told I was to be given a diruetic since my legs were swollen never happened either. So at this point, I see no effing reason why I needed to stay any longer. The hospitalist actually agreed with me, but asked me to wait a little longer so the cardiologist could sign off on my discharge.

The hospitalist came back about 3 minutes later and said, “Oh, he won’t be able to get to you for a while, so you can just go home.” She took out my IV and told me she’d be back in a minute with my discharge papers. 10 minutes pass. 20. Then I decided to put on my clothes to make it clear I was leaving. A phlebotomy tech comes in and tells me I need another blood test. I tell her I was told, definitely, that I was only waiting for papers to be discharged. She, very confused, went and talked to the doctor, the exchange of which happened right outside of my door. The phlebotomist was clearly of the attitude that I was just being beligerent, even thought I had been calm and collected (no matter how angry I was at this whole fiasco) when talking to her. The doctor comes in and says, “Oh, you need to do this test before you can be released”. I said, “No. You said I could go home now, and the only thing in the way was getting the discharge papers. I’m holding you to that.” She shrugs and says, “well, we don’t really need it anyway.”

As one last “Fuck you, Del”, as I signed my discharge papers, the nurse pulls out a “Against Medical Advice” (or AMA) document. This is what you have to sign if you leave a hospital when the doctors have clearly told you you shouldn’t. She tries to quickly explain that because I refused to stay for another test, I had to sign myself out AMA.

“Bullshit.” Was my answer. I refused to sign. This means that if I ever go back to that hospital, I will be marked as a non-compliant patient, which definitely affects the care you receive. But you couldn’t drag me back there if my life literally depended on it.

There was one moment of levity, though. At one point, a tech came to put on the EEG machine and started using masculine pronouns. The nurse or doctor who came in heard this and tried to correct the tech. The tech looked at me and my only answer was “I chose a gender-neutral name for a reason!” For the rest of the exchange, the tech used male pronouns while the doctor/nurse used female ones. It was amusing.

But not amusing enough to make me ever want to go back there. Or send anyone I care there if they need more than stitches. I will find a better local hospital, or I will endure the drive to JH.

This is one of those updates I really don’t want to write. It’s purely a medical update, and it’s important for people who know me to know about. I thought really hard about just emailing a handful of people about it and keep my mouth shut otherwise, but when I started this blog one of the promises I made was that I would post about medical things I am going through.

Not an accurate depiction of either procedure.

As you might have guessed from the title, this little escapade has to do with my manly parts. Seems there’s something odd happening, and they have to do two surgical procedures in hopes of both figuring out what’s going on, and hopefully fixing it.

I’ll know more on Monday, but the first procedure (D&C) will be pretty soon – perhaps as soon as next week. I have to wait for two weeks after that to undergo the second procedure (ablation).

This likely means that I will be mostly housebound for April. I had a D&C in 1996 and it took me many weeks to fully recover. Supposedly, the second one will be easier to heal, but since I’ll still be healing from the first one, I expect it will take a little longer.

I don’t feel like sharing some of the speculation about what might be wrong, although cancer has yet again been introduced into the “possible” column.

When this is over, I will be sterile. I’m okay with this.

And yes, because everyone else has asked, I did ask about a hysto, and was told that this is a better first shot in the war. If this doesn’t work, then we’ll be talking about a hysto.

I’m not really up for a lot of discussion about this. I’ll likely post on Facebook when I know when the procedures are.

This is a depiction of the second procedure. They left out the part where they electrocute my uterus.